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Wednesday, October 30, 2013

Long long time ago, much before I had Samaira, I was
determined not to give crackers to my babies for snacks. I was determined to
feed my kiddos fresh fruits and vegetables, and other healthy snacks during
non-meal times. Now, I don’t even remember the point at which I made the smooth
transition of offering crackers to Samaira. I guess I took comfort in knowing
that Samaira liked her broccoli and spinach while she ate crackers. But do
babies change or what?!? Samaira, all of 22 months now, and a very picky eater
on certain days, absolutely loves crackers! How did we end up this way? She can
have crackers for an entire meal – that’s how much she likes them. I now feel
silly that I ever wished for a cracker-free kid.

In my pre-Samaira/Rehan days, I had a thing about never yelling
at my babies. Now, there are times I just do. Sometimes I yell in pure shock.
Sometimes I yell in panic. Sometimes I yell because I fear my babies will
injure themselves or others. It’s almost like a reflex. Totally involuntary.
But it happens. And I yell.

Before I was a mom, I had this notion that I must teach
something new to my kids every day. But most of the days, I don’t focus on teaching them anything new. I just focus
on being….with them. I focus on playing with them, reading to them, the same
old. I realize that life is not an agenda. Life does not have a curriculum. While
I want to do the best for my kids, I also want to, and want them to live life. So,
at least for now, most of the days we just live life.

Rehan is all of 5 month old now and in some households, 5
month olds are sleep trained with a somewhat decent schedule in place. I am
nowhere close to that. I am nowhere close to getting close…that’s how far I am!
Rehan drives his schedule. He sleeps through the night, kind of. He does not
wake up-wake up, but starts sucking his thumb while still asleep so I nurse him
a couple of times at night. So, as much as I would have liked, I haven’t really
been able to sleep train him.

And then there are things that I don’t even try hard enough
for. I feed Samaira left overs, just as we eat left overs. And I have no qualms about
that. I could live off of left overs. I love left overs. So I feed left overs
to Samaira too. Rehan has not started solids yet…but wait till that happens.

There are so many parenting philosophies and it is all too
personal a decision. When to put kids in their own rooms, when to potty train
them, when to feed them, what to feed them, how much to feed them, when to let
them be and when to control them, what medicines to give them, what medicines
to not give them, what to teach them, when to teach them, which religion to
teach them or not, which myths to sustain and which ones to not, and the list
goes on and on and on. I try my best not to judge other parenting styles. I
definitely try not to judge other parents. All of us try to do the best we can.
The best we know. To the best of our abilities. All of us think we are doing
the right thing for our kids. All of us love our kids to bits.

One of the differences I have felt between my pre-kids and
post-kids days is that now I know how easily non-parents tend to judge parents,
especially with absolutely no prior experience whatsoever. That’s not to say that
parents don’t judge other parents, because that happens too. But I now know
better. I know now, that it is a beautiful thing to dream a perfect vision of life
after kids, life with kids. But it is also a beautiful thing to build your own
family-reality. According to your own values. Your own gut. Your own view of
the world. Your own situation. Your own preferences. Your own comfort.

What I mean is that I am a very different parent than what I had imagined myself to be. My reality is different from my dream. So even though my baby loves crackers and that’s not something I had envisioned for her, I am cool with it.

Saturday, October 12, 2013

The month of October is down syndrome awareness month. When I think of creating awareness about down syndrome, I immediately think about how much
positivity and support we are surrounded by. When we got Samaira’s diagnosis a
couple of days after her birth, all our friends and family had the perfect
reaction. I don’t know how they got it so right. I don’t know how they found it
in them to react just the right way. They were happy for us, excited with us,
they cried with us, they felt our insecurities with us. But none of them were
sad. You know, not sad-sad. I don’t know how we managed to surround ourselves
with such amazing people with big hearts. While we have the buffer of our
friends and family who reacted perfectly, we know it is not the entire reality.
There are still people who feel sad for someone who has a baby with down
syndrome. There are still people who say “I am sorry” when they hear someone
has given birth to a baby with down syndrome. There are still people who say “what’s
wrong with him/her”. There are still people who say it is sad to have a baby
with down syndrome. There are still people who are insensitive. And we cannot
run from that reality. Therefore, we need a down syndrome month. A month to dispel
all the myths, to answer any questions, to create more awareness, to sensitize
people, and, to create more acceptance. It not only helps individuals with down
syndrome and their families, but I believe it makes other people better human
beings. So while having a special month to celebrate something you are trying
to mainstream seems counter-intuitive, it is very much needed until we get the
society to a state of unconditional acceptance and love.

History and time are filled with perceptions about down
syndrome – some of which are facts, some are myths and some are result of
society’s reaction and attitude toward down syndrome. Down syndrome is named after doctor John
Landon Down, who was first to categorize the common features of people with
down syndrome. Dr Jerome Lejeune discovered it as a genetic condition whereby a
person has three, instead of two, copies of the 21st chromosome. In
a process called non-disjunction, the two copies of chromosome 21 fail to
separate during the formation of egg, resulting in an egg with two copies of
the chromosome. When the egg is fertilized, the resulting fetus has three
copies of chromosome 21 in each of its cells. It has nothing to do with race,
nationality, socioeconomic status, religion or anything the parents did during
pregnancy. In the 1980s, the average lifespan of a person with down syndrome
was 25 years. People with down syndrome typically have physical and intellectual
delays from birth but there is a wide range of abilities within the population
that are impossible to predict ahead of time. People with down syndrome are
significantly predisposed to certain medical conditions including congenital
heart defects, sleep apnea, Alzheimer’s, hearing loss and hypothyroid. There is
also evidence of increased risk of celiac disease, autism, childhood leukemia
and seizures. Most online and otherwise resources list some common physical
traits of down syndrome such as flattened appearance on face, high/broad forehead,
upward slant to eyes, smaller nose, small ears, protruding tongue, short neck/hands/legs
and poor muscle tone. There are certain stereotypes associated with down
syndrome – that they are happy, loving, angels. Sometimes it is true and
sometimes it is not. People with down syndrome are people. So sometimes they
are happy and sometimes they are sad. Sometimes they are loving and sometimes
they are feisty and quarrelsome. Sometimes they are angels and sometimes they
are little devils. Just a couple of decades ago, parents and doctors preferred
to institutionalize a baby with down syndrome. A lot of traits such as lower
IQ, low life expectancy and lower-perceived abilities was a result of this
inhuman practice. As more and more people are becoming aware and sensitive and
accepting –early intervention programs, medical care, quality educational
programs, stimulating environment, positive attitude of parents and society
have made the outlook toward and reality of down syndrome a drastically different
one. Life expectancy of an individual with down syndrome has gone up to 60,
average IQ level has gone up, the quality of life has gone up. People with down
syndrome attend school, work and contribute to society in meaningful ways. While
a quick search of down syndrome will bring results of physical features
typically associated with down syndrome, very rarely but surely, you will come
across resources that talk about the beautiful Brushfield spots in their eyes,
their perfect eyebrows, their beautiful silky hair, and their warm irresistible
hugs.

Something that all the people in the special needs community
know is the difference between “normal” and “typical”. The opposite of normal
is abnormal. Opposite of typical is atypical. So when you refer to a kid who
does not have special needs as normal, it implies that the other kids are
abnormal. Whereas referring to them as typical, the preferred way, means others
are atypical. Referring to a baby/person as down’s baby (incorrect usage), or
down syndrome baby means you are defining a baby with this condition. Whereas
referring that individual as a person or baby with down syndrome means that
they are people first and then the condition. This is called people-first
language. Chromosomes decide physical and intellectual traits of beings. A certain
type of chromosome gives people blue eyes, or blond hair, or dark skin, or tall
height. But there is more to them than the color of their eyes, their hair
type, their skin color and their height. Just the same way, three copies of 21st
chromosome decides certain physical and intellectual traits in people with down
syndrome, but there is much more to them than just those traits.

Samaira is almost 22 months old now. I cannot believe how
time flies. When she was born, she was the most peaceful baby. Share rarely cried.
She slept through the night. She showered us with smiles. She had the most
beautiful, innocent eyes. She had rather calm demeanor. She always gave me the
most body-melting, heart-mesmerizing hugs. She ate everything and anything I gave
her – broccoli, spinach, flax-seeds, and spicy Indian food. As she is growing
older, she is adding more colors to her personality. She isn’t always her
charming self, but most minutes of the day she is. She does not always sleep
through the night – it depends on how she is feeling and if she is congested. She
still has the most beautiful and innocent eyes, but with a touch of naughty. She
has learnt to say no, and with a lot of meaning behind it. So she says no when
she does not want to give me a hug, and I respect that. She yells and screams
and shouts when things don’t go her way. She is picky about what she eats. She doesn’t
eat spicy food anymore because she was given non-spicy food immediately after
Rehan was born and now she is resistant to spices. She is still very warm and
affectionate. She still gives the most breathtaking hugs. She loves her baby
brother immensely. She pours her heart out on him. She does not like it if he
is upset or crying. She rocks him in his car seat and Shhhhhhhs him when he is crying. She is quite a performer. When she
knows there are people around here, she reacts in one of two extreme ways. She either
starts crying and wants to get away from the crowd, or she gets in the center
and wants to laugh every time others in the room laugh and play the adult. She talks
a LOT. She blabbers all day long. She loves to read books. She loves to dance
to her toy-music. She loves her some crackers. She requests Siddharth to sing
the song Humma Humma (from the Indian
movie Bombay). Samaira loves going to
her day care. In fact she looks forward to it. She has her own social circle there.
She wakes up in the morning and says morning
mumma. She loves being bounced on the ball. She loves it when Siddharth
holds her upside down in the air. She pretty much enjoys anything that involves
doing monkey business.

What I am trying to say in so many words is - it really is ok. It really is no big deal. It really is just an extra chromosome.

Siddharth and I are not too sensitive about the people first
language. I don’t always correct someone who refers to their child as normal or
refers to my baby as down syndrome baby. I didn’t know the difference between
normal and typical before Samaira. I don’t know if I would have referred to
someone as a down syndrome baby before Samaira. It’s hard for me to imagine
what I would have done. So I am ok if people don’t always use the right
language. I do care about people’s intent though. I care that their heart is in
the right place. I care that they care about Samaira. I care that they love
Samaira unconditionally. I care that they treat Samaira with affection,
tenderness, discipline and dignity. I grew up in a family in which we did not do
things because that’s how society does it. My parents gave us the best
education and the best opportunities at every stage in our lives, even if it
defied societal-norms. So society’s preconceived notions about down syndrome
did not come in between their unconditional love for Samaira. They loved and
cared for, took pride in and pampered Samaira just as they do any of their
other grand kids. Our friends and family have created this happy bubble around
us in which life is perfect and the world is all blue sky, shiny stars, purple
flowers and flying hippos. But I know there is a world outside my world. And we
will surely venture out in that world someday. It is for that world that I write
today.

October is down syndrome awareness month. Never hesitate to ask us any questions about down syndrome.

Wednesday, October 2, 2013

I sat down to write something a hundred times over the last month and a half and just couldn't stay up long enough to finish writing. So I have at least 10 half-baked posts that I wanted to write in that moment and once the moment passed, I didn't really want to write. It is those little moments of everyday life that I want to capture at times and preserve forever. So much has happened in the last few weeks. My babies are exploding, in the best way possible. In baby-creativity-space-time-continuum, new things emerge every day. These are the things that shift the gears of my day from same ol’ to I frikkin’ love my life. So I figured, I might as well try and remember everything that happened in the last few weeks that I never want to forget.

When Sammy looked at my yoga pants the other day, she shouted nanana, which means banana in her language. At first I thought I had banana remains stuck on my pants. I got up to look for it and clean it and it took me a good 20 seconds to realize that she was referring to the Nike sign on my yoga pants. I have read enough literature to know that kids have a fertile imagination and we adults constantly try to conform them to the things we know and take them away from their imagination. So Sammy’s perception of Nike sign as a nanana makes me a proud mumma. So like a 21st century parent, I responded with positive reinforcement and clapped for Sammy.

Rehan has started babbling in his own international baby language. His favorite words are anganganga, aagggeeee, uhaaaa and so on. While we sing our regular songs and rhymes to him, most fun is talking to him in his language. He laughs and smiles a ton, especially when someone is talking to him. He is an attention seeker. I want to preserve his happiness for a life time. Samaira mimics us and says anganganga when she sees Rehan. It is the sweetest thing ever.

My favorite moments are when my precious interact with one another. Samaira adores Rehan. She gets really bothered when he is not happy or is crying. She constantly hovers around him - kissing him, patting him, and occasionally poking his eyes. Oops. So we have to be quite careful when the sister is hovering over her bhai (brother). I see Rehan smile at Samaira every time he looks at her. I see Samaira look at Rehan with loving eyes. I don’t think she is possessive about him, or us for that matter. Every time Siddharth plays with Rehan, she stares at Siddharth but with admiration and appreciation. She has an expression of happiness when she sees Siddharth play with her bhai.

Samaira loves her naani (my mom) a lot too. My mom wasn't well a few days back and spent a lot of time lying down in layers next to the fireplace. Samaira was not used to seeing my mom like this and was so concerned about her. She would constantly hug my mom, say “hiiiii” and kiss her. Although my mom was trying her best not to pass on the joy to her. Seeing Samaira so concerned with her naani is special and speaks volumes about the emotional relationships she can form.

Bhai kicks like he means it. He has a play gym in which he gets to kick a piano with his feet and it plays music. He musters all the energy in his teeny-tiny 13 pound body and throws his legs toward the piano and BAAM comes the sound that makes him happy. I love his funny giggles and laughs. They seem so meaningful. They do really take my breath away.

Parents often think of leaving their legacy behind. I am not old and wise enough to think about legacy, but I am young and mature enough to think about the future of my babies. The latter is not really a function of age, but more a function of being a mom. If there is one thing I want Samaira and Rehan to be when they grow up is happy, and loving, and respectful of others’ feelings. Well, so it is isn’t just one thing I want. I want many things for them. I have all these wishes for them and their future. I believe in being human. That means accepting all the aspects of human personality. That includes happiness, jealousy, ambitions, acceptance, tolerance, anger, sadness, insecurities, possessiveness and love. So I don’t expect my babies to be these flawless beings who are all lovey-dovey-gently-cuchiii-cooos. I just want them to be happy and nice people. Because everything else will come and go. But their attitude will stay with them.

Samaira is a very loving sister. Rehan is a very happy bhai. Their attitudes build moments for me. They build moments for my lifetime. I am their mumma!